Waking up

When my doctor first put me on nortriptyline, he warned me that I may feel a jolt when I wake up, and that was normal. Well, unless he meant I would lose the ability to fall back asleep easily, I never experienced that. I just noticed today (after being on neurontin for awhile) that I just don't notice waking up. I know it's a silly thing to be excited about, but pre-medication, I was used to waking up feeling like someone hit me repeatedly with a bat, like I could barely breathe, and like I was coming down with something fierce. Now I just... wake up. Yes, it's often early, and I can't always drift back like I used to (not a problem on bad days, though), but it's still better than feeling like I slept through a sneak attack. I might secretly be a morning person. Meh, that's pretty doubtful. I think I'm one of these people, but I don't know how much the Fibro influences these things.

On another health related note, I was recently brought to tears by reading this. A member of a forum I visit gave me the link for that website, and while the writer has Lupus, I felt she was describing my thought process every.day. When I first read a theory like this, I heard it describe your energy as a jar of pennies. So, rather than spoons, in my head I spend energy coins. Changing my mindset has been a hurdle for me (like with the above author). My approach used to be (and this is something that may work for certain disorders or healthy people) to push myself so I could stretch and grow. I have always wanted to be able to do it all and see it all and I abhorred any excuse that followed "I can't, because..." I never wanted to miss school when I was sick, as a child. I have trouble with people doing things for me because they think I need them to, or because I actually do.

A few weeks ago, I was struggling with the need to constantly redefine myself as sick. Having to say that I'm not well enough to do something was a new challenge each time. I hope it gets to the point where those closest to me (especially my family) understand my limitations (I didn't want to type that. I don't want to be limited). There will always be people, though, strangers and coworkers, who don't understand or don't know, and I will - again, I'm struggling through writing this. I was going to write that I will have to explain I am sick or can't do something. I don't want to have to explain. Well, at the very least, I need to solidly understand what I am and am not able to do and communicate that with others. I don't need to tell them I can't do something, only that I am not up for it/not interested/would rather do something else or do it a different way. Right? I am terrified of being the sort of person who lets an illness impose more boundaries than absolutely necessary. I want to give Fibromyalgia nothing. I want to be a brave survivor who pushes through life in the face of adversity. But that's not how it works, is it? I need to remember to save my coins and spend them wisely. Not bad financial advice, either.

Sometimes Fibromyalgia makes me a bitch

This past weekend had it's ups and downs. I went on a hike that was quite a challenge for me, even though it was the easier/shorter version than what the majority of the group I was with did. [pictures pending] Those of us who didn't do the whole thing went with for the first 4 or so kilometers, which included a some moderate (for an experienced hiker) climbing. Our group then turned around and went back to the start of the trail- so altogether I probably walked about 9 kilometers. I was so proud! I never ever could have done it without the stretches I've been doing every morning or the new medication I'm on. I switched to neurontin (low dose before bed) and it's been much better. With the previous medicine, I was having a lot of trouble staying alseep- often waking up after about three hours- and when I increased the dosage I started to be groggy and have trouble concentrating throughout the day. Well, yes, I had those problems anyway, but the medicine definitely made it worse. I've heard (from my pharmacist mother) that neurontin is actually related to the active ingredient in Lyrica... just an FYI for anyone out on the internets looking for others' experience with different Fibro meds.

So, the hike was the high point of the weekend, even though I am still paying for it with horrible leg pain. Oh well. Looking back over the distance I traveled and the rock faces I went up and down was soooo worth it! Our hotel had a pool and I found swimming later that same day (as a sort of cool down) and the next morning amazingly pleasant. I'm not qualified to predict the future, but my guess is that my pain would have been much worse without those swims. I've at least been somewhat functional in the days since.

The low of my weekend was calling and snapping at my husband. Yes, I was in pain. Yes, I'd just had to sit through a 2+ hour car ride with my family and was ready to bite anyone's head off. I still feel horrible. I emailed him afterwards and apologized... hopefully he'll understand. He's been great through the waiting to get diagnosed and the continual work of trying to manage. He was incredibly patient for the many, many times I couldn't get out of bed. I feel bad for how much this does also affect him, but I guess that's why they throw "in sickness and in health" into vows. No getting out of this one, honey! I talked to him also about how, when I come back home, the routine I need to have can't just be for me. It will be a big change for, well, both of us really, to have set meal times and bed times. Ugh, it's almost like we're grown ups or something. He is still just a few months out of a being a college student, though, and his main routine is to stay up until the sun is about to rise playing some sort of game on his computer that makes gun fire echo through the house. Not that I don't enjoy the occasional pizza at 1 in the morning, but I know that maintaining real-life routines will make me feel better. So I guess I'll suck it up.

Despite abusing my poor, supportive husband, I really am happy with how things went this weekend. Oh, and I was told after the fact that one of the fellows doing the abbreviated hike also has Fibromyalgia. I wasn't really going along the walk announcing the fact (which led to a rather rude and confrontational comment from another hiker about why couldn't I do the whole thing... because you can't mind your damn business!), but he mentioned to someone he thought he heard that might have been the case, and to let me know he's been through it. He is in remission right now (if that's used to apply to Fibro...), so I'm excited to talk to him and get his looking-back perspective. This is my first opportunity to talk to someone else with it- if there is anyone out there in internet land reading this who is looking for a connection/support, please don't hesitate to comment! I won't bite unless you ask.